COVID-19 and Long haul COVID Resources


2020 Congressional Work

Categories: Congress, Uncategorized

A number of our US supporters have reached out to ask for clarity about #MEAction’s work 2020 congressional advocacy.  We realize this is an area where we should and can communicate better. We wrote this statement in the hopes of helping the community to better understand our thinking and strategy for this year.

First and foremost, it has always been and continues to be very important to us—within the constraints of our resources and mission—to support our volunteers, be responsive to our community, coordinate our work with other organizations, and to collaborate wherever possible in order to have the biggest impact. 

We are so proud and grateful for the work #MEAction’s activists, state groups, volunteers and supporters have done to support H.R. 7057. Over the past few months, #MEAction has met with Solve M.E. to discuss our respective efforts and how we can best coordinate and support each other’s work. We have shared H.R. 7057 with our community on social media, and plan to continue to spread the word. We support this bill, and we encourage all of you to participate in Solve M.E.’s call to action. However, we have not mobilized with the full capacity of our staff and communications platforms for several reasons.

As many of you know, #MEAction has a long history of congressional advocacy work. We have launched independent congressional efforts and have also participated in many joint efforts. What we have learned, and what is not always immediately apparent, is that joint efforts are not always additive.

They take  enormous investments of  staff and volunteer time to coordinate and create consensus-based strategies and communications.  In the past, MEAction and Solve M.E. have coordinated not only between our two organizations, but with many other stakeholders, including volunteers, additional organizations, and individuals. We have spent dozens upon dozens of hours holding meetings, responding to email chains, and simply informing everyone one while trying to  build and maintain consensus. This is on top of the resources required to actually implement the work. A multi-pronged, months’ long communications campaign is a major effort.

We believe our #MillionsMissing and federal agency work last year suffered as a result. We were spread across too many important projects within a short timeframe. We also had little capacity left to invest internally, which is how we grow stronger and over time and develop the organizational resources to achieve our biggest goals. To be more effective, we felt strongly that we needed to narrow our focus this year.

Pre-pandemic, we decided our strategy for 2020 would be to focus on #Millionsmissing and take a strong position on federal agencies for several reasons. First, we felt this was work that only we could do. We are the only US ME organization with a culture of protest and an “outside” strategy of holding the federal agencies accountable publicly. We chose this focus  not because we don’t believe congressional advocacy it is vitally important—we know that it is and we know that we have value to add when we mobilize the community and go in, all guns blazing—but because we had every confidence that Solve M.E., especially with the support of key volunteers and all of you who have been getting deeply and directly involved in that work, could make progress on the Hill this year without our formal involvement. We believe all of you have more than demonstrated that! 

Secondly, again, pre-pandemic, we felt that 2020 would be a year where it would be the most challenging time to make progress on the Hill. It was an election year, an impeachment year, and we anticipated a distracted and highly polarized Congress. Instead, we could focus on the important job of challenging institutions from the outside as unapologetic activists––again, a role that only #MEAction is currently poised to fill. 

Since the pandemic, we have had to make some rapid adjustments, including shifting to a virtual #MillionsMissing and developing new strategies for federal advocacy. This took an extraordinary amount of time and effort this spring, making it all the more important to focus our efforts. We’ve been educating clinicians and long-haul COVID patients on ME/CFS; offering support to the community; leveraging our press relationships to frame the narrative of ME/CFS as a possible outcome of COVID-19 in the Washington Post, Atlantic, Bustle, CNN, and more outlets to come; and marshaling our staff and volunteers to challenge the NIH and CDC like we know we need to. 

We look forward to continuing to amplify the work of other organizations in the future and focusing on our own work and capacity-building, as we are able, and depending on what is right for the context. Let’s keep on keeping on doing the work and thank you all for all that you do! We look forward to continuing our strategic plan for 2020 and hopefully participating more fully in Congressional work in 2021.

Categories: Congress, Uncategorized

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